Downingtown West Alumni Shines National Spotlight in the Charge Against Rare Diseases

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Marcus Sic | January 26, 2024

UPLIFTING ATHLETES “YOUNG INVESTIGATORS DRAFT” FEBURARY THIRD AT THE LINC

Remember the name Rob Long. Not just as a Downingtown West and Syracuse University football standout, but as a testament to the unwavering resilience of the human spirit in the face of adversity.

Rob’s athletic journey, once destined for the bright lights of the NFL, took a sudden turn in 2010, during his senior year of college at Syracuse University, when a rare and aggressive form of brain cancer entered the picture. While the diagnosis snatched away his NFL dreams, it couldn’t touch Rob’s indomitable spirit. Instead, it became the catalyst for a new kind of victory, one fought not on the football field, but in the trenches of medicine, science, and community–dedicated to conquering the silent warriors known as rare diseases.

High School Gridiron: Building the Foundation for Perseverance

Rob’s story doesn’t begin in the spotlight where it is now, but on the sweat-drenched fields of Downingtown West High School. It was here, amidst the community he grew up in and the camaraderie of his teammates, that the foundation for his future resilience was laid.

Football wasn’t just a game for Rob; it was a crucible where he forged his work ethic, his leadership skills, and his unwavering determination. He learned teamwork, the importance of sacrifice, and the power of pushing through adversity. It was also his ticket to live out his lifelong dream of playing professional football.

Through the adversity of playing high school football, Rob learned to overcome setbacks, bouncing back from tough losses, and celebrating hard-fought victories. These lessons, etched in the sweat and grit of high school football, would prove invaluable in the face of his greatest challenge.

Cancer Strikes: From Gridiron Dreams to a New Battleground

Fast forward to 2010.

Rob, a team-captain and star punter at Syracuse University, is on the cusp of living out his NFL dreams. His future seems dazzlingly bright, a testament to the years of dedication and relentless pursuit of excellence honed on the high school gridiron.

Then, the unthinkable happens. After weeks of undiagnosed symptoms, a brain scan reveals a rare and aggressive form of cancer. Suddenly, the roar of the crowd is replaced by the hushed tones of the hospital room. The playbook for his life is ripped up, replaced by a new, unpredictable reality.

But Rob, the Downingtown West warrior, wasn’t about to surrender. He faced cancer with the same tenacity he brought to the football field. He endured grueling surgery, intensive treatments, and months of uncertainty. The physical toll was immense, but his spirit remained unbroken. He drew strength from his family, friends, teammates and the determination he’d grown through years of playing football.

From Sidelines to Championing Hope: Uplifting Athletes Takes the Field

Emerging from the crucible of his illness, Rob’s perspective had shifted. He saw firsthand the devastating impact of rare diseases not just through statistics, but through the eyes of patients and their families. He knew he had to use his platform, his story, to make a difference.

That’s where Uplifting Athletes comes in.

This Doylestown, PA-based non-profit harnesses the power of sports to uplift the lives of those impacted by rare diseases. Rob, channeling his inner coach and teammate, became the organization’s Executive Director. He saw sports as a bridge, a way to connect athletes, fans, and researchers in a united effort to conquer these invisible illnesses.

Uplifting Athletes’ signature event, the Young Investigator Draft, perfectly embodies this spirit. Each year, 10 early-career researchers working on rare diseases are “drafted” and awarded $20,000 grants to fuel their crucial work. This year’s draft, on February 3^rd at Lincoln Financial Field in Philadelphia, holds a special significance. It marks the $1 million milestone in grants awarded through this program, a testament to the collective power of hope and action.

More Than Just a Number: The Power of the Human Spirit

Rob Long’s story is not just about one man’s triumph over adversity. It’s a beacon of hope for the countless families navigating the uncharted waters of rare diseases. It’s a reminder that even when the odds seem insurmountable, the human spirit, forged in the fires of perseverance, can illuminate the path forward.

Rob’s story is another reason to love this game of football.

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